Advance decisions to refuse treatment – presuming a presumption of capacity?

In NHS Surrey Heartlands ICB v JH [2023] EWCOP 3, Hayden J was asked to consider whether an advance decision to refuse invasive tests or treatments (including life-sustaining treatments) was valid, not at a point when those tests or treatments were sought to be carried out, but in contemplation of the potential that they might be.   As Hayden J identified at paragraph 9, the offence of s.2(1) Suicide Act 1961 (aiding, abetting, counselling or procuring another to take their own life):

is a challenging backdrop to the facts of cases like this one and, no doubt in part, the reason that the ICB seek their second declaration i.e., “that a person does not, therefore, incur liability for the consequences of withholding such tests or treatment from JH”. It is important to emphasise, however, that there is no obligation on a patient, who has decision-making capacity, to accept life-saving treatment. Doctors are not obliged to provide treatment and, perhaps more importantly, are not entitled to do so in the face of a patient’s resistance. This reflects a mature understanding of the importance of individual autonomy and respect for human dignity.

JH, diagnosed with what would now be recognised as Autism Spectrum Disorder as a teenager, had had very extensive investigations into gastroenterological problems as a child, necessitating ‘incessant’ hospital involvement, leaving him profoundly anxious and unprepared to attend hospital, as well as deeply resistant to any form of invasive medical treatment.  An encounter in 2017 concerning his diet at a meeting for which he did not feel had been fully briefed or prepared led him to want to prepare an advance decision setting out which tests and / or treatments he would be prepared to consent to.   Hayden J described the advance decision, prepared on a template form from Compassion in Dying,[1] as “manifestly carefully constructed and […] pellucidly clear.”

At the time (in 2017) a capacity assessment undertaken concluded that JH had capacity (although it is not entirely clear from the judgment as to whether this was an assessment in relation to making an ADRT, or in relation to some other decision(s)).  Later, however, clincians “wavered” about the correctness of that assessment.

In light of the possible doubts about whether the ADRT had been created capacitously, and in light of the fact that JH was identified by his treating ICB as being at immediate and obvious risk to life because of his very restricted diet and very low BMI, an application was brought to confirm the status of the ADRT, and also for a confirmation that no liability would be incurred if tests / treatments were withheld from JH.  JH had capacity to conduct the proceedings, and both attended (by telephone) and spoke to the judge.   However, it is not entirely clear whether the case was proceeding on the basis that JH currently had capacity to make decisions about tests / treatment, or whether he lacked capacity.  In any event, even if JH currently had capacity, it is understandable why the confirmation in relation to the ADRT was being sought: there must have been on the material before the court a real possibility that he would lose it, at which point the ADRT would become very relevant indeed.

On the facts of the case,  Hayden J had no hesitation in finding that JH had had capacity in 2017 to make the ADRT.  Separately, he also made it clear that, even if JH had not, and if he now lacked capacity to consent, he could not have contemplated a situation in which the clinically indicated investigations could have been forced upon him:

23. […] The strength of his feelings, the consistency with which they have been held, for so many years, and his obvious distress at the contemplation of such an intrusive investigative process would, in my judgement, be brutally corrosive of JH’s autonomy. It would both compromise his dignity and cause him great personal trauma. It could not be reconciled with any concept of “best interests” in the manner required by the MCA. As Miss Sutton reminds me, JH told Dr W [his GP] that if the court determined that it was in his best interests to have further investigations, “he would not undergo them willingly and would have to be physically restrained”. He also told Dr W that”undergoing investigations such as a colonoscopy would make him feel violated and it is not something he could tolerate”. I emphasise that Dr W does not consider that any further investigations should be undertaken against JH’s will due to the distress it would cause him. I agree.


It is entirely understandable why this case was brought, and Hayden J was at pains to explain the importance of his essentially confirmatory role in relation to the ADRT.   One point, however, is not addressed in the judgment (which may be down to the fact that the application was clearly made and determined at some speed).  Hayden J proceeded on the basis that he was bound by the presumption of capacity in terms of the determination of the position of 2017.  However, I would respectfully suggest that this is not, in fact, obviously the case, or at least not in the normal fashion.   Rather, I would suggest that the position in relation to retrospective determinations of capacity is as set out in the draft updated Code of Practice to the MCA 2005:

4.104 Where a person’s capacity to make a decision is being assessed retrospectively, the approach to be taken is different to assessing capacity ‘in real time’. For example, it is clearly not now possible to seek to support the person to make the decision. It will be necessary to gather as much evidence as possible from surrounding documents and circumstances to establish whether or not the person had capacity at the time.

4.105 Importantly, the presumption of capacity works differently where the person’s capacity is being determined retrospectively. Where proper reasons are put forward to suggest the person did not have capacity, anyone who relies on the fact the person did have capacity will need to be able to show, on the balance of probabilities, that this was the case.[2] Who might need to show this depends on the circumstances. It might be the attorney where a power of attorney is questioned. It might also be the person themselves (or someone acting on their behalf) where an advance decision to refuse treatment is questioned.

Albeit without detailed analysis, this was the approach taken by Peter Jackson J (as he then was) in A Local Authority v E [2012] EWHC 1639 (COP) (see paragraph 55, in particular), which does not appear to have been referred to Hayden J.

What is set out above is not intended to cast doubt on the correctness of Hayden J’s decision.  However, it is important to note that – in a different case – the mechanical operation of the presumption could mean that medical practitioners would be required to abide by the advance decision notwithstanding the presence of a legitimate doubt as to the person’s capacity. That would be a problematic outcome, not least in terms of the state’s obligations to secure life under Article 2 ECHR.  Rather, I would suggest, the right approach is to test whether proper reasons had been advanced to cast doubt upon the person’s capacity to make the ADRT and, if they had, then to require whoever is relying on the person’s capacity at the time to make the case.

[1] See now for an updated version of the template.

[2] I.e. in line with the position (at common law) in relation to testamentary capacity or lifetime gifts.  See, e.g., Gorjat v Gorjat [2010] EWHC 1537(Ch), and this discussion paper.

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